Hi All,
First post. I've tried to use bullet points to keep it short. Thanks in advance for any advice that you may have.
I'm trying to decide what to do next. I'm looking for a diagnosis but so far I feel the doctors are focusing on the symptoms instead of trying to understand the root cause of the problem.
Example: Ophthalmologist says "You have blepharitis." I say "Could I have Sjogren's?" He says: "Yes but it doesn't matter, I'd still tell you to use a hot compress and eye drops."
My summary:
- ~30 year old male
- Healthy lifestyle
- In the past, I never had a problem with dry eyes. I'd work long hours in front of a computer with no problem. My eyes would water excessively (tears running down face) when eating spicy foods or when doing activities outside in the cold.
- Around 6-8 weeks ago started getting dry eyes and they have been getting progressively worse since.
- Generally gets worse as the day goes on but sometimes I wake up with dry eyes as well.
- I now have much lower tear volume when eating spicy foods, etc.
- I am getting some dry mouth but I think that could also just be stress related (this is stressing me out)
- Main complaint is stinging eyes.
- In the past year I've also had a period of fatigue, a period of bad hand eczema and some intermittent eczema on my ear.
- In cold conditions (snow, etc.) I tend to have more issues with cold fingers/toes than others around me.
- One of my parents has an autoimmune disease
- Strong family history of thyroid (primarily hypothyroid). Sibling, parent and grandparent.
Tests/Treatment so far:
- Fairly recent blood tests show TSH: 4.2 (reference range 0.38 to 5.5) and T4 Free: 14 (reference range 10.5 - 20). Doctors have indicated that is all within range and does not warrant any further consideration.
- I was given a prescription for Patanol drops (anti-histamine) to rule out the possibility that this is caused by allergies. Drops did not fix the problem.
- Optometrist confirmed that my eyes are dry and that I had some blepharitis.
- Ophthalmologist also diagnosed me with blepharitis.
- No testing done for Sjogren's (no ANA test run.)
- I've started using eyelid wash and a hot compress with some improvement but I still don't know if I am treating the root problem
Current status of diagnosis:
- I've reached the end of the process. My case was escalated to an ophthalmologist and he told me to use a hot compress and eye drops. No further tests or appointments are planned.
My main questions:
After six weeks of dry eyes and using every over the counter eye drop in existence, I am not at all surprised that I have some inflammation of my eyelids!
I am concerned that there may be a more important underlying situation (subclinical hypothyroidism or Sjogren's) that is being ignored and that the blepharitis is just a symptom or complication of the real problem.
My main questions:
Shooting from the hip...if you were to hazard a guess, is this: Blepharitis and/or Sjogren's and/or Hypothyroid?
Could it be "just" blepharitis?
If it is Sjogren's, is it important to get a diagnosis or will my treatment basically be the same?
What are the chances that my thyroid is to blame?
What next steps should I ask for? Should I try to get an ANA test? Should I fight for a referral to an endocrinologist? Should I just use the hot compress and over the counter eye drops for a few weeks to see what happens?
Thanks again for any thoughts you may have.
In my opinion, if you're really worried, there would be nothing wrong with asking your doctor for an Ana test. They are somewhat expensive though, depending on what kind of insurence you have. If you mention that there is a family history of autoimmune, then I think most doctors would run the test for you. It can take a long time to get a diagnosis for this kind of thing. If it is sjogrens there are a couple medicines they might try, like plaquenil to slow progression, so I think getting all the information you can certainly wouldn't hurt.
Good luck.
I wouldn't quite dismiss your thyroid yet. With TSH: 4.2 (reference range 0.38 to 5.5), there is a lot of controversy with the reference range and the newer standard has an upper range of 3.0 I think, but most labs haven't updated theirs. If you have a history of autoimmune, they should be checking your thyroid antibodies as well. If I were you, I would try to track down the "official" document on the web of the TSH range change and then bring that back to your doctor asking for a referral to a endocrinologist.
What autoimmune conditions are in your family? If you have dry eyes and they continue to worsen, I would recommend calling your ophthalmologist back and asking about starting Restasis. One thing that really bummed me out was when my ophthalmologist told me that my dry eyes would never get better, but the Restasis would keep it from getting worse. Catching things earlier can prevent permanent damage.
Alot of Sjogrens symptoms are treated "systematically" Treatment for dry eyes would be the same with out without Sjogrens. The same goes for dry mouth. Plaquenil helps with overall feeling of wellness but does not" curel "Sjogrens.
Getting a diagnosis helped me know what it was and a little peace of mind--not that I can get over it, but that I can now deal with it.
hello tiger and welcome.
You won't like hearing this but I have read that a sjogrens pt has an average wait of 7 years before getting a diagnosis and will end up seeing 4 or more doctors before getting the diagnosis.
I myself started with the very dry gritty burning red eyes. Was told by my PCP it was allergies even though any type of allergy prescriptions never worked (i tried Patanol too).
Then my eye dr said it was occular rosacea, tried meds for that with no improvement.
Finally my feet hurt and right hip...saw my PCP, he examined me and several joints and said it was osteoarthritis , and I just didn't feel right about it and led the direction of our talk to me wanting blood work to check and make sure it wasn't anything else....sure enough the labs were positive in so many ways....I then moved onto the rheumy.
I would go see my PCP and ask him to run lab tests to check for autoimmune disease..which maybe something will show up and get you on the road to some help.
take care and let us know what happens.
eye2dry
Thanks all.
Anyone think it might just be Blepharitis? Any hints on telling the difference between the two?
Blepharitis could just be that. Plain old nasty crusty eye infection. I don't know about thyroid, but often is included in SJS. But definitely not an important symptom until you've had some treatment.
If it is Sjogrens, it is important to get treatment for the symptoms. I had it 7 years before diagnosis w/no treatment. If your blood tests etc don't come up positive, you don't want to be in a waiting game. Find a rheumy
who will work with you on the symptoms.
No reason to go to an endocrinologist now, and maybe never. I haven't. I have hypo thyroid and my G
P treats me.
Go ahead and buy some OTC artificial tears without preservatives. A couple of types to try are: TheraTears, Refresh and there are many kinds of Refresh. Everybody finds their favorite drop after trial and error. it might be awhile until you get treatment started for relief, but the eye drops won't hurt you. Use them 3 or 4 times a day if that helps. At night GenTeal Gel is something many of us like and it does better at night, you have to scrub up around your eyes in the a.m. A warm compress on your eyes for 5-10 minutes won't hurt and you can even try cold compresses which always gave me more relief. Don't sweat the small stuff like what kind of drop, don'[t spend too much time ""doing research" as that's what we pay drs for. This bunch is the best and we hope you stay around. Lucy
Hi Tiger,
I have a lot of experience with Blepharitis, I worked as a Ophthalmic tech for 15 years, I am recently 'retired' (he he) due to the birth of my second child so I am now at home with the kids.
warm compresses and tears help. Did your doc talk about lid scrubs? Bleph patients can have dry eyes because the inflammation of the glands in your eyelids inhibit the oils from secreting that protective layer on your tear film. Blepharitis can be a one time thing but usually it is chronic. In bad cases an antibiotic ointment is used.
If you are not happy with the results talk to your Ophthmologist again about it and then talk to your primary doc about any other sympotms etc, and get a second opinion and a 3rd, 4th and so on.
I hope that in your case you do just have some bleph issues and not SJS.
good luck-hootyhu
Thank you all. Given the positive ANA test today, some fairly healthy results on the thyroid and increased incidence of dry mouth, SJS is looking a lot more likely. Then again, I've got to have hope that my case might not progress very far or maybe that all the stress is causing the dry mouth and that the eyes are just blepharitis.